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How do you manage the emotional weight of MG?
A couple months ago, a member brought up palliative care as something she wished there was more discussion over. So we’ve been having those conversations this month. 🙂
Palliative care isn’t just physical support — it includes counseling, spiritual care, and help navigating the emotional landscape of chronic illness.
What helps you cope with the mental and emotional strain of MG? What support do you wish existed?
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14 Replies
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Thank you for this great questions and for the wonderful articles you post. I have a non-traditional, what used to be called New Age, spiritual belief system. I believe that, though not all things are good, all things work towards good; that things don’t happen to me, but for me – – to learn various things that will help me grow mentally physically and spiritually. I also believe that I am so very much more than my body.
Though I still get upset and angry with my MG symptoms, that has become rarer and rarer as I be reaching my five-year mark. My beliefs have helped me transverse this experience – – I called it the dance— with much more grace and acceptance than I generally would.
There is so much I have learned from this experience, but I wouldn’t wish it on anyone I can see where this condition is not “good” but for me, it has worked for the good grown spiritually, mentally and physically through this process.
Plus, because I was raised traditionally in the 50s and 60s, a lot of myself identity is burden by the “I am judged by what I do,“ and therefore, not being able to do what I used to do has been an issue talk therapy. It was very helpful in helping me overcome that.
My advice to people would be to find a spiritual path that you can embrace live with this condition.
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Hey Frank.
Thank you for those kind words and sharing your perspective.
I am glad you have found something that helps you cope and manage with this crazy disease.
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How can I find out if I have both MG and Ataxia? Is there a special doctor that I can see about this? I have Agent Orange from Vietnam 1968.
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Hi Paul. A neurologist would be the appropriate type of specialist to talk with about concerns regarding both MG and ataxia: https://forumsstg.myastheniagravisnews.com/myasthenia-gravis-diagnosis/. Depending on the situation, someone may also see a neurologist who specializes in neuromuscular disorders or movement disorders.
Since you mentioned Agent Orange exposure during your service in Vietnam, the VA may also be a helpful resource for information about Agent Orange exposure and related health concerns. We hope you’re able to connect with the right specialists and get some answers.
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MG messes with your mind as much as your muscles. The constant fear of the next flare. The guilt of needing help. The loneliness. What helps me is leaning into whatever brings me peace. For me, it’s music and being outside. Just sitting in the sun. Also being honest with my loved ones about what I need. They can’t read my mind. What I wish existed? More group therapy specifically for autoimmune patients. We share so many of the same struggles.
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Thank you for sharing this. The guilt, fear of the next flare, and loneliness you described can add such a heavy emotional layer to living with MG. I love that you’ve found some peace through music, being outside, and communicating openly with people. Your idea about more group therapy specifically for people living with autoimmune conditions is such an important point. Have you tried an MG support group before? Or have you faced any barriers?
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I’ve lost 70 Lbs, from 226 to around 150lbs. I have no appetite! Why?
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I have extreme guilt over needing as much help as I do. I feel very lonely as I live alone. I don’t have many friends that are available to help me physically and emotionally. The only thing that gives me any relief is music. I adore music of all types and play piano as my MG allows. I have recently been having much more difficulty dealing with everyday tasks and have also thought about palliative care and how that may assist me. I also have been dealing with a lot of post menopause symptoms that have negatively affected my MG, as well. I understand that can significantly affect MG and was wondering if you know of anyone that has been dealing with that.
Jana
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I forgot to say that I wish that subscription and delivery services provided discounted services to disabled individuals. I spend quite a bit of money on delivery services and being on SSDI does not make for an easy living with extra expenses.
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Jana, I can truly empathize with most of what you posted here. I don’t live alone, but I can imagine the struggles you must have with that. I know that I already feel very isolated and homebound already, but not to have my husband around like he is now to do the things I can’t and just for companionship, I would just lose my mind. And talking about losing my mind leads me to the next topic of peri-menopause and menopause. I can totally relate. I was going through peri-menopause and then menopause on 20mg of prednisone and it was straight up hell. I was emotionally all over the place and having constant MG flares. It was a total dumpster fire for several years. Now, I can look in the rearview mirror of that, thankfully, and think that I am past the worst of it (hopefully) but it was rough.
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Jana, thank you for sharing all of this. The guilt of needing help, especially while living alone and managing more difficulty with everyday tasks, can add such an emotional weight on top of MG itself. We’re glad music continues to bring you some relief and that you’re able to play piano when MG allows.
Your point about discounts for disabled individuals is such a valuable idea. Thank you for adding your perspective to this conversation.
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Jana, I’m really sorry you’re carrying so much right now. ❤️ I’ve been through crises with MG myself, and I know how lonely and overwhelming it can feel, especially when you feel guilty for needing help.<div>
</div><div>Something I’ve learned is that sometimes the people who love us may also feel guilty or helpless because they don’t know how to help. They may genuinely want to be there but simply don’t know where to start. If you feel able to, maybe try telling the people you trust exactly what you need — even if it’s something very small. Giving someone a way to help can sometimes make it easier for both of you.</div><div>
</div><div>And please don’t feel like you have to live up to the standards you had before MG, or to what you think you should be doing. Our limitations are real, and adjusting our expectations doesn’t mean giving up. Sometimes, getting through the day, resting when we need to, or doing one small thing is enough.</div><div>
</div><div>Communities like this one have helped me too. Being able to say what we’re feeling to people who truly understand can make us feel a little less alone.</div><div>
</div><div>I really hope you can find some comfort and support around you, Jana. And if there are people in your life you feel might be able to help, I truly hope you’ll consider telling them what you’re going through and what you need from them. You don’t have to carry all of this by yourself. ❤️</div>
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I struggle a lot with the emotional weight of MG. I have always been a very independent, self-sufficient person and MG totally checked me on that. It’s always been very difficult for me to ask for help. It’s very difficult to deal with the limitations. I remember a few times where I was really weak and accidentally dropped something that broke and had to sit down while my husband cleaned up after me. That was so demoralizing and discouraging. I felt like such a burden.
More support groups might help. It’s a very lonely disease most of the time. You frequently end up house bound for different reasons, lack of energy, fear of getting sick, too hot outside. I don’t have very many close friends or close extended family. Most people don’t care to take the time to understand the disease or what I’m going through. Thankfully, I have my husband and kids.
This forum is helpful. It’s good to talk to other people who understand the varying issues.
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DD, thank you for sharing so much of your own experience here. Something that might look small from the outside can carry so much weight when it represents a loss of independence.
We also appreciate you sharing your experience with isolation, menopause, and the value you’ve found in connecting with other people who understand MG. It means a lot to hear that this forum has been helpful. These conversations are exactly why having community spaces where people can talk honestly about the parts of MG beyond the physical symptoms matters so much. Have you tried MG support groups before?
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